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D3 regimen long term efficacy


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I remain conscious that since joining this community a few days ago I risk getting a bit spammy with all my questions - I hope you don't mind!

Just a quick one really about the d3 regimen. One thing that seems consistent with CH is the idea that the beast has a habit of changing - e.g. things that used to work suddenly stop working. However, anecdotally, I'm picking up a general sense that the d3 regimen appears quite promising in terms of consistent response over time. Sure, there might be variations/fluctuations, but the general perception I get from reading sufferer experiences is that, if you're a responder, there's pretty decent long(ish) term benefits being derived from it.

Is this perception wide of the mark, or would you generally agree that there's some truth in that analysis?

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Correct! a lot of people have hade great success with using the D3 regimen. For some it have stopped clusters all together others like myself it has cut down the amount of hits per day and the severity of each attack. You will need to get your bloodwork done to kind out what your levels are and make some adjustments but it is worth giving a try. XXX Formally known as Batch on this site, is available to help you out with any questions about this. 

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You are so right about it having a habit of changing.. I got my first CH when I was 23 (I am now 62), and it has changed and morphed over the years.

I just started the vitamin regimen in 2016, had no cycle at all in 2017-2018, had a light cycle of "shadows" in 2019, I am now at "what I hope" is the end of a cycle that started early December 2020... Even though this has felt like a full cycle in frequency, it is much lower on the pain scale, and they are not lasting as long.

I really hoped when I went the 2 years PF, I was going to be one of the lucky ones that would never have one again, but I keep telling myself they are not a fraction of the pain level I am used to, and they really shorter, The first thing I do when it starts is look at the clock, have been for years.. and I watch A LOT less of the clock these days :)

Good Luck!!!!!

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Hey Drewbie,

Your analysis is spot on!  The year-over-year efficacy of the anti-inflammatory regimen CH and MH preventative treatment protocol as captured with the online survey that's been running since December of 2011 found an average of 80% of the 313 CHers starting this regimen experienced a significant reduction in the frequency of their CH from a mean of 3 CH/day down to a mean of 3 CH/week in the first 30 days. 52% of these 313 CHers experienced a lasting cessation of CH in the first 30 days.

I might add that this raw efficacy for a favorable response edged up to 88.9% for 2019-2020.  During this same 2-year time frame, the complete cessation rate increased from 53% to 66.7%.  I suspect this increase in efficacy is due to the switch to the Bio-Tech D3-50 I began posting about in June of 2018 and the switch to Methyl Folate + I began posting about in early 2019. 

I've researched available open source, published results of cluster headache prophylaxis RCTs.  None of them has risen to a level efficacy where 2/3 of participants experienced a complete and lasting cessation of CH.  And, I might add, with no adverse events noted/reported.

The majority of my research has focused on why 12% to 18% of CHers do not respond to this regimen.  Roughly half of these non-responding CHers managed to experience a CH pain free response by working with their PCP/GP with frequent labs for serum 25(OH)D3, calcium and PTH to safely increase their 25(OH)D3 serum concentration up between 100 and 180 ng/mL (250 to 450 nmol/L). 

I've been tracking two of these non-responder CHers who have worked with their PCP/GP taking 50,000 IU/day vitamin D3 for months to elevate their 25(OH)D3 serum concentration higher than 200 ng/mL (500 nmol/L).  Both CHers have normal calcium serum concentrations and one of them finally experienced a lasting cessation of CH.  They were both taking 3 grams/day Quercetin and Turmeric (Curcumin) and up to 6 grams/day vitamin C in divided doses.

I am far from having definitive answers why some CHers do not respond to this treatment protocol, but there are a couple reasons that are common among them.  The first is allergic reactions.  It appears no matter how high their 25(OH)D3 serum concentration, an allergic reaction can knock CHers out of CH remission unless first-generation antihistamines like Benadryl (Diphenhydramine HCL) or Quercetin are taken at high enough doses.  The second is CHers who have gone on a Ketogenic diet avoiding all sugars and wheat products, appear to respond at higher rates.

Regarding your question on triggers still being a problem after successfully controlling CH with vitamin D3 and its cofators?  It all depends on the trigger.  The only way to know for sure if a previous trigger is still a problem after a CH pain free response due to vitamin D3 is by using the "By Guess and By Golly" test method.  I would keep the oxygen, vitamin D3 loading doses along with plenty of Quercetin and vitamin C handy.

Take care and please keep us posted.

V/R, Batch

 

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@xxx with regards to quercetin, I think I may have an issue with that as I take the blood pressure medication candesartan. This is not for high blood pressure but a headache preventative prescribed by my neurologist. My general diagnosis is chronic migraine and eCH, and the candesartan has shown some success, at least on the migraine side. That said, there's still real difficulty in objectively distinguishing between between the root cause of some of my symptoms - I've always been suspicious that the symptoms my neuro says are migrainous might just be persistent CH shadows. I had a long history of migraine prior to CH so it's always been a bit hard to conclusively explain all my symptoms.

Do you think I'd have to stop the candesartan before adding quercetin to the d3 regimen? The suggested dose is particularly high, especially in the context of me taking candesartan (which I believe is a drug changed by the liver?)

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Hey Drewbie,

Good question.  I can't answer it directly with a "yes: or "no".  What I can say is we are seeing CHers who were low- and non-responders to the anti-inflammatory regimen, achieve favorable results by adding 3 grams/day Quercetin, Turmeric (Curcumin) and 3 to 6 grams/day Vitamin C divided into 3 or more doses taken during the day.   The thinking here is that among its many physiological functions as a plant-based flavonoid  found  in abundance in apples, honey, raspberries, onions, red grapes, cherries, citrus fruits, and green leafy vegetables, Quercetin acts as a natural antihistamine.  There is also sufficient open source medical evidence that Quercetin limits the effectiveness of candesartan, an an angiotensin receptor blocker.

On a related note, there is sufficient medical evidence that Quercetin acts as an ionophore to transport zinc ions into cells infected with the Wuhan (SARS-CoV-2 Coronavirus) where it inhibits the enzyme that enables replication of the Wuhan virus, thus stopping the infection.

Bottom line, it's dealer's choice.  You'll need to decide what to do.

Take care and please keep us posted.

V/R, Batch

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Thanks @xxx

I think I might speak to my neurologist about this. Seems like it wouldn't be a bad thing to add in quercetin, so will be interesting to see whether I could do that without having to change anything else up.

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Drewbie, it seems like cycles are up this year all over. I suspect, along with others, that people did not get their normal amount of sunshine this past summer. That has resulted in lower than normal levels of D for many, which means that loading back up a bit can help. Perhaps ask your neuro to order a blood test for you. 

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@spinythis did occur to me too. However I was wondering whether it might be the extreme shifting in exposure to sunlight and the outdoors that did it for me. 

From April to September, I partook in the most extensive period of working out in my life. I'd call myself a road cyclist, and last year the pandemic lockdown restrictions in the UK allowed for me to really up my game. I was out on my bike 5-6 times a week, covering pretty much 6000km outside in that time. I was averaging over 200km a week, 7-10 hours out riding.

Then the clocks changed, the weather changed. And I switched to the turbo trainer in my garage. No more buckets of sunshine, and my activity levels dropped by more than 50%.

So, I had been thinking that going on an obsessive binge of sunlight and exercise, only to follow it with a cold turkey removal of it, might have messed me up pretty bad. 

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The extra sunshine I would not blame at all. I have worked in my gardens daily for hours all summer and had my D3 measure at 64ng in August!!! Then, by September 21st, I was back in cycle. At that point, I went on the D3 year round. And have not had a full cycle since! :) Until then, I thought that my gardening provided enough D to get through the summer in a better range for a CHer, say above 80ng. Nope. It did not. 

I highly recommend the D3 Regimen! Easy, good for you and cheap compared to Pharma. 

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